1/8/11

Wow, how time flies huh! Over 3 years ago, Steve and I made a commitment to Tyler that we would fight with all we had to help him battle autism, early intevention is key right? We'd set aside our marriage, our wants/sometimes needs, to do what we needed to do to help Ty. In hindsight, I can't imagine where Tyler would be if we hadn't made that big of an effort. He certainly has a long road a head of him, however he's happy, he's found a way to communiate, his body seems to be healed to the ponit where he can eat freely and without objection. All and all that's what is most important, he's happy, he can be well nourished, and he can communicate. But I would be lying if I didn't admit that I had wished for more./ I really wish that Ben and Tyler had a better relationship. Ben told us the other day how he doesn't like Tyler's autism, honestly we don't either! I also wished he was talking by now, yeah, he has a way to communicate and hopefully by the time he's an adolescent, if he's still not talking, he'll have a more socially acceptable device like a cell phone, that also can act as his method of communication. Those would be my two wishes if I could have had just a little bit more progress.

Compared to where Tyler was at 12 months and 18 months, he's amazing. We can go outside now without him dropping to the ground to bang his head into the concrete, walkigng the dog was incredibly stressful in our house. We can set food at the table and he will freely eat on his own with utensils and not being strapped into the chair. He's wanting to be around people and participate in group activities more. He is able to go to restaurants and out in large public places without melting down. Our life has gotten signifantly easier in the past few years as a result of these improvements.

So as we near Tyler's 5th birthday, and also the end of that "window" that everyone talked about for the timeframe that intensive intervention would make the most impact. I'm ready to slow down. Good thing because I'm pretty sure we are out of steam, lol. Doesn't mean we are going to give up, not by any means. We'll still continue with private speech, we'll still go on to music therapy (update on that in a bit) but we are ready to slow down other efforts that cause us so much strain. We are officially done with B12 shots, the stress that it's creating and the cost are just no longer worth the benefit. We will continue to give him methyl b12 orally. We also have cut out quite a few of his supplements not only for savings but we aren't really wanting to give him anything that's not helping so to speak so we continually testing by taking out certain items and those that we don't see any sort of negative impact, we stop all together. Last but not least, I'm going to relax more at home. I feel pressure to make each interaction with Tyler some sort of learning opportunity, I know this is a result of a study and for very good reason has helped so much, however, it sometimes makes getting life accomplished hard and causes arguments in our houselhold. I'm done with feeling that pressure. I guess i look at it as worst case scenario, if Tyler never improves from this point (which is impossible cause he's such a smarty pants), I accept that fate. I feel like it's time to refocus on our whole family and my marriage. Time to get us all happy again as one big family and let the schools and therapists do their magic with Ty.

As most of you know, we are moving in 3 weeks. That will likely be pretty hard on Ty so we are strategizing about ways to support him through the transition. This is a big step for us. One that made me give up the last piece of the future I had once dreamed of as well as our credit rating, but more importantly it's the first step in my new dream, a happy, more relaxed, family. We will be renting a house, very similar to our house now, in a nice neighborhood with a little park 2 blocks away. We researched options a lot and chose these area (and had to fight a bit to get the house!!) because it's in a township so that rent is lower since taxes are lower. We could get a 2 bedroom condo within the city of ann arbor or a 3 bedroom house within the township for the same amount of money. We also researched schools for Ben, Tyler is placed upon his need but Ben will go to whatever homeschool is assigned to the area. The school Ben will be going to is the smallest elementary in ANn ARbor and each parent I have talked to sang it's praises. Ben struggled with the transition to preschoool and I wanted Kindergarten to be as small as possible. I felt really good about being able ot finally factor Ben into our decisions as well.

That's all from us, although January has been a horrible month for us in terms of finances, emotional and soon to be physical toll, even work has been really difficult, we know that there is light at the end of the tunnel:) I am going to welcome it with open arms. THanks a million times over for all the love and support from family and friends who have given us more over the past 4 years than we could ever give back. We could not have done it with you and your dedication to Tyler and our family is so appreciated.

xoxoxo

Melissa

12/13/2010

We worked really hard to get these pictures, impossible to get both boys looking and smiling. There were a whole of tickles and hidden parents in these pics trying to get a good shot, we got a few good ones:)

Things really seem to be coming together on the home front and making changes to help simplfy our lives a bit. It's been a hard road but I feel like we are definetly on the right track and making good decisions.

A friend sent me this e-newsletter from her local doctor's office. I thought it was interesting. As you all know, we believed Tyler had autism from the beginning but he did get worse after 12 month and 18 month vaccination. Remember that video I posted on a previous blog, http://tylercretsinger.blogspot.com/2010/01/blog-post.html It was such a deliberate "ma-ma" that came out....just before 18 month vaccines. I just had to watch it again, over and over, I tear up each time. Oh how I wish I would have listened to the minority, from day one I had concerns about Tyler, and that's a warning sign for parents, those kids who show just a bit of abnormality, need to avoid as much toxins as possible. We have a guy at work, has twins, one boy and one girl, they just went in for their 18 month (maybe 2 year) vaccines and the boy had a serious reaction to the vaccines. I told him things he could do biomedically to help his son recovery as well as signs to watch out for moving forward. That's the thing, everyone listens to mainstream doctors and media until something happesn to them, they think we are all crazy until it happens to your child, you see the changes, you feel the pain of it being a decision you made. It's frustrating. So this article is even more frustrating.... this is the bottom line

What's happening with vaccines NOW?

Drug companies are relying heavily on the future of vaccines. Why? Because health care costs are high and changes are coming to bring those down. This will include less medical imaging, less lab tests, less doctor visits and possibly restricted drug sales. A survey was conducted before the health care bill was passed. 45% of medical doctors said they would leave medicine if the bill passed. That's a lot! With less doctors, less prescription drugs will be sold.Drug companies see that their future is not in drugs because of these reasons. In order to bypass this imploding system, they are relying on vaccines. When a vaccine is made, then mandated by law, everyone needs to get it, not just the sick. This bypasses the medical doctors. Testing? Not necessary. It doesn't matter if you are sick or well. The profit center expands from just the sick to everyone.

At a recent seminar that we attended a doctor spoke about his experiences with vaccine-related injured kids. He lives in a part of New Jersey that has the highest rate of autism in the country. In the last three years, he has seen over 200 autistic kids. Each one was fine until they were "given that one shot". He finds mercury in all of them. (Vaccines have mercury in them except if you request a shot without it.) The autistic kids become more social, start talking, need less external stimulation, etc. when the mercury is cleaned out of their body. (We do this also.) The doctor has done three studies for the National Institutes of Health (NIH) and his dad has worked for the NIH for 15 years. He said the NIH is "more corrupt than the entertainment industry." Example: When you google "vaccine+autism" or "mercury+autism" the studies that come up show no link s between the two. This is criminal. Talk to moms who have autistic kids and they say "Junior was fine until he got that shot." The other main source of autism is from mom's mercury fillings while she was carrying the baby. The mercury was transferred to the fetus in the blood or through breastfeeding later. There are studies on this to prove it. Here are 21, all referenced. 21 studies. We need our dentists to stop using mercury fillings. Feel free to tell your dentist, "No mercury. Thank you." If he says there is no harm from them and the American Dental Association can prove it, find another dentist. We have many good ones to recommend. One of our patients, a new mom, reported to us that her pediatrician said there are 96 shots in the first two years. That's too much formaldehyde, mercury, and aluminum for any size human being. Even if the vaccines were not toxic with poisons, the theory of vaccination alone is not proven.See here that polio is historically directly related to pesticide production. The same website shows smallpox increases with smallpox vaccination.The site here has 26 graphs that show how vaccines have no effect on the disease it is supposed to cure. It also shows how many diseases had been on the decline for almost a century before the vaccine was even introduced. These include scarlet fever, whooping cough, rheumatic fever, tuberculosis, tetanus, measles, and more. The reason why these diseases started to decline since the 1800's is because our sewers are now closed and we use soap more. That's right, showers and toilets are medicine's greatest advance ever. Beyond that, eat real food, not food products that look and taste like food. Use whole food nutritional supplements, not the chemicals labeled as vitamins. We can help you with that.

We have supplements to help your immune system if you choose not to get a flu shot. The decline in sick days is measurable and significant. We do really well with people who are "always sick". They go through a winter with only one cold instead of being sick for four months straight.

If you know an autistic person, bring them in. We'll find the mercury and remove it. Also, vitamin D plays a huge role in getting kids to talk and reversing autistic symptoms. Reliance on medication and vaccines is a problem. Drugs are good for saving lives during emergencies. The chronic degeneration of a body caused by American food needs to be reversed with nutrition. Call us to get your health back!

-Dr. Schmidt

:(

It's with great sadness and frustration that I tell you that autism insurance bill did not make it through, it was never brought to the senate floor for a vote :( It's been a hard week for us for many reasons but this is just a huge hit. I had tried nto to get too excited but I couldn't help but get caught up in the what if's. Maybe we wouldn't have to give up the last piece of the life we had once planned, maybe if I can get Speech and Behavioral therapy covered, I can afford two music therapy session a week for Ty. Maybe we can get Ben involved in more extracurricular activities, maybe, maybe, maybe....all got shot down with this horrible news.

I was sad last night when I got a feeling it was going to get voted on and then this morning when I found out for sure it didn't make it, well I just couldn't stop crying and just now I've found myself in just a dull melancholy depressive state, so I was delighted when I just got the following email from Ty's teacher:

"You should see Tyler with his device! He is scrolling through multiple pages to find the pics that he wants, and is using it to do fill-ins when I'm reading the story! This is fantastic!! Will try to get some video footage for you to see at some time :)"

Thanks little guy for putting a smile back on my face and for a friendly reminder that you are worth every tear, every penny, and every future battle we have to face on your behalf. XOXO baby

Please contact your local senator today! The autism bill has one last chance tomorrow to make its way through the senate, please let them know why you support this bill. Premiums will go up less than 1 % but the overall life long savings is huge due to the advancement that can be made in this kids with early intervention, they will require less services from the staet when they are adults. Call, email, do whatever you can. PLEASE! I cannot begin to tell you the emotional, physical, and financial burden we've had to deal with because of the lack of insurance coverage. We need your help!

We worked quite a bit with TYler this weekend on using writing utensils. We looked for creative ways to get him interested. A friend loaned us a stylus with a sponge tip that can be used on the IPAD. Attached is a picture of Tyler which shows him using it. one of his goals on his IEP is to write a few letters. I'm thinking if I cna get him to master this skill with electronics where he is motivatated, we can transfer it over to pencil and paper. I Also puleld back out an old leap frog toy where you draw shapes, he still needs help but he's very motivated, keeps bringing it to me to play with him. In general, he was very much a mama's boy over this Thanksgiving break.

Gotta go, please call and advocate for insurance.

11/23/10

Here is some more info on Tyler's goals for this year:

Goal: Improve visual-fine motor skills to increase independence and participation in classroom activities as measured by progress int eh following objectives:
1. Tyler will trace TLE using a small piece of crayon
2. With sciossors (left handed), Tyler will cut a 2" line independently

Goal: will increase independence and participation in activities of daily living, self-care as mewasured progress on the following objectives:
1. Tyler will stay dry all day
2. Tyler wil complete arrival and departure routines

Goal: Tyler will improve his social behavior and play skills:
1. Tyler will follow a peer and imiate their behavior
2. Tyler will make requests to peers
3. Tyler will respond to request by peers.
4. Tyler will initiate a social bid to a peer by giving them an object or by using a communicative gesture (tapping on shoulder, taking hand, using voice output communication).

To improve listener responder skills:
1. Tyler will identify two compontent noun-verbal and verb-noun combinations
2. Tyler will follow directions to "go get" and to "give to" various people and objects in his environment

Goal: Tyler will improve expressive communication:
1. Tyler will use voice output communication or PECs to make requests during activities through his day.
2. Tyler will use voice output communication or PECs to respond to questions, a) what b) where c) who
3. Tyler will use voice output communication or PECs to make choices/requests, to respond to questions, adn to indicate he wants a turn during group and paired activities.
4. TYler will produce sounds within his repertoire on command, imiate vowel/consonant sounds, and ebprompted to produce word approxmiations.

Goal: Tyler will improve his pre-academic skills related to reading and mathmatics
1. Tyler will answer questions or use phrases related to a story.
2. Tyler will sequnce three pictures to retell a simple story
3. Tyelr will improve his numerical concept developmetn as demonstrated by giving a requested number fo items from a group of ten/telling how many items are in a group up to 10.


He has lots of work to do :)

11/21/2010

I really wish I had more time to update the blog. So many good things are going on and I just can't find time to make updates.

Tyler is fantastic lately, he's trying new foods, making all kinds of sounds on demand, and thriving in school. He's really a delight to be around lately.

In terms of speech, I swear he said the first part of "uh, oh" yesterday. He'll say Ba ba ba ba on command. I spent $80 dollars last year on an advocate to have just one consonant sound be added to his IEP. Now anytime you ask, he'll say it, he'll also say mmmmmm and ma ma mam and then point at me. Yes my heart melts each time. He'll say dada sometimes too. He knows who we all are.

I am so thankful for our IPAD, it really helped open up a lot of people's eyes as to Tyler's capabilities and it also has become family member in terms of helping Tyler get through stressful situations like grocery stores, doctors, restaurant, etc. Oh speaking of which, we know longer have to put Tyler in a higher chair at a restaurant! Previously we could not keep him sitting if he wasn't in a chair but now we can get a booth and he'll sit still. As soon as he stands up as soon as I say, sit down, he does. He's really doing great. back to the ipad, i occasionally take the boys to the gym with me as t hey have a fantastic child care facility, and one girl who works there on the weekends knows Tyler because she worked at Splash camp a few years ago, she's getting her masters in autism. Anyway, one time when I was taking the boys in, Tyler was a bit resistant. I asked Ben if anything happend last time they were there ( I love Ben for being able to talk for Tyler!!!) and he said Tyler got upset that they wouldn't let him play on the computer. So I thought, I'll show them... next time we went in, Tyler brought his IPAD with him so they could see all that he's capable of. they were blown away. In the time it took me to go up and pay for the kids and come back they were already asking me a bunch of questinos about it. My response...just let Ty show you!

He's been doing good in speech too, Grandpa takes him each Monday, THANK YOU GRANDPA! Steve started a new job and thanks to layoffs, I'm doing the job of 4 ppl so we are so strapped for time and then the commute and both boys being on opposite sides of Ann Arbor, well we are just really running thing so Grandpa is a life saver. Anyway, speech has really noticed when Tyler does and does not have his B12 shots! Felt bad last week, we both tried the night before and the morning of speech to get him his overdue shot but the little bugger is on to us. You have to remember, he's had these shots since he was 18 months old. We tried the suckers but didn't see the same effects and we also don' t get the same effects through oral medication so shots it is. Oh and can't remember if i mentioned or not but we found an amazing pediatrician who wrote a script for music therapy (meaning flex spending can be used) and for B12 shots. very very rare for main stream pediatricians to do this, apprently I made a very good argument. nad he was great with boys. Really followed Tyler around during the check up and got into whatever position he needed to, to check the ears, heart, etc. And was patient with us finding ways to help Tyler through it. Ty hates his ears touched let alone someone pulling on them to look inside. Doc was so patient and took all the time ijn the world with us, he's phenominal!

Oh back to shots, so speech notices a difference when he does and doesn't have them. We used to give them around bath time bu tthen he started screaming anytime the water was running, to this day we still have to bathe him in the other bathroom, tried it at dinner but anytime his pantws are pulled down he freaks and then we'd sometime sneak it in at diaper which comes our next problem. Tyler already has a bit of issue with his diaper being off and hands wandering but when he thinks a shot is coming it's holy hell war to get him cleaned up. Found myself the other day negatively reinforcing something I should have been positively reinforcing ( on the potty). Not fun and a long not pretty story so I'll refrain from sharing, we'd all be happy giving up those damn expensive pain in the ass (literally) shots but when even therapists are noticing a difference, we must keep them.

OK onto IEP. This year was so much different than last year. I felt i had to pull tooth and nail to get them to recognize Tyler's skills and capabilities and this year, completley differnet! Tyler now has a communication device at school! We had an AT mtg a few backs that was great, so many ppl vying for Ty. He's blowing through his goals and they put new goals for the device in his IEP (unheard of last year) and he's already starting them. Already categorizing, like being able to put an Orange in a fruit category. In fact he had to go through his 3 year assessment for reevaluation of service and they had his PECS book and his Dynavox there in case he wanted to communicate and during the free play part of the ADOS test he looked around and didn't see toys he was interested in so he want to his dynavox scrolled through multiple pages to find his gears and made the sentence I want gears... at which piont his teacher and the evaluator said they had to get him his gears since he was so smart to use his new device to ask for them. Everyone says how smart he is and he just flies through the technology that they give him. I'm really excitged abou this future potential.

oh and in case i didn't mention this before, he received a grant for music threapy! We'll start next semester. We also are goign to hire a private music therapist and will have a mtg soon to just get to know eachother essentially. We hope our lives will slow down a bit late next winter when we can get this up and running on a weekly basis.

I'll write more later on his specific IEP goals but just know that he's doing phenominal!

10/16/10

Hello!!

A few weeks ago I posted on facebook that I needed a good sign. Something to let me know that I was making the right decisions. That night I ended up in the ER, hmmm, not the sign I had in mind, however, within just a few days the good news started to pour in, so now I know... our decisions as of late are the best for the family and there are more good things to come for us, yeah. I have so much good news to report that I'm afraid I may forget some of it.

We had an assistive technology meeting for Tyler the week before last. HIs teacher was the one pushing for another meeting (love it). THere were 10 ppl in the conferfence room, right away I loved that tyler was important enough to the district to have that many people in attendance. Two of the women in attendance were from the district and there were speech pathologists with a lot of experience with augmentive communication devices. I gave a brief opening of Tyler's history as only 1 person in teh room (OT) had been with Tyler since he joined the school. The woman from the district were blown away by TYler's potential as to what I told them and his teacher confirmed. They used a word for him that I can' t remember but that basically labelled him teaching himself to read. Everyone was in agreement he is a great candidate for a communhcation device and they immediately reserved one for him in the district. That set the stage for setting up goals for Ty. At first someone mentioned 5 communicative functions on the device (details will follow later) and then his teacher said, well how about 10? Hee hee, I actually mouthed "i love you" she's a big believer that motiviation has been Tyler's issue in the past, and that he very much is quite aware and knows what he's doing and it just needs to be pushed a little and with the introduction of electronics into the classroom, he's much more interested and engaged. oh that's a good story too, let me finish this one. Ty is gettign a device from the district which will be rented of sorts (we don' t pay) that can come home as well. Can't wait for him to get it, school wills how him how to use it. It's a dynavox.

Ok Ty's class this year is a joint classroom but the second classroom is sort of the more engaged and involved kids. Well they made a decision last week to have Tyler start his day in that classroom. They say there is a huge difference between last year and this year and he responds and stays engaged in circle time, makes choices, etc. This is very exciting. Also he has a new speech therapist this year and she voluntarily asked if she could go watch the private speech therapist work with Ty so they could work as a team, yeah, of course! She went last week. oh and big thanks to grandpa who takes Tyler to speech for us every Monday!

Oh..... we love the ACC, one of TYler's guardian angels, AMy works at the ACC. she called me the other day to tell me Tyler was awareded a scholarship (10 weeks) of one on one music therapy, yipeeee!! Right now we are just tryinh to work through scheduling issues. This bought me tijme to find a pediatrician...

and voila.. found a great one. Someone told me of an office that is great but they run sort of a lottery and you have to call at the beginning of the month and try to be one of the patients they accept as new. I called and got in. Upon their advice, yippee, they set up a "see if it's a good fit" meeting with the parent. Perfect for me because I had some pretty specific questions. 1) will you write a script for music therapy and 2) will you write a script for B12 shots so we no longer need a DAN doctor (this is the one that concerned me). Had the meeting this week and it went great! I loved the doctor, he was very open minded and really listened to everything and answered all of my questions great. He did tell me that he needed to talk to his partner abou tthe shots and get back to me. He called me the next day and said they'd do it! So the boys have an appt there coming up soon just so the doc can see them while they are healthy and get to know them, etc. I'm so excited and love the practice, it seems like a perfect fit.

Ok, I think that's all, I'm sure i"m forgetting something. Lots more news to report soon, lots of going on in our personal lives as well. Ben is phenominal honestly, loves his school and never wants to leave, very happy with the way things are turning out.

xoxoxo